Living with CHD – Teens
It is hard to be a teenager. It can be even harder to be a teenager with CHD. Even if you feel great, CHD never really goes away. It is important to continue to go to your doctor, even if you don’t feel like you need to. It is better to stay on top of your health than have something creep up on you and cause big problems. These resources can help you make that big leap from your parents being in charge to you taking control of your well being.
This interactive checklist guides patients gradually through the process of transition from pediatric to the appropriate adult care and helps them take ownership of that care. This resources is set up in phases, rather than by age, making it useful to patients across the lifespan.
From quizzes to fact sheets, this site helps teenagers understand the importance of taking control of their health. While this site is not specific to congenital heart disease there are many great resources that can be helpful.
I Heart Change – A Canadian project
This website is designed mainly for young people with congenital heart disease. You may need to register to view the resources available. Parents, caregivers, and health care professionals can register, too.
Heart Talk: Transition - Taking Over the Reins and Staying in Care
Cardiologist Dr. Keila Lopez, creator of Texas Children's Transition Program, and Conquering CHD's ACHD Coordinator, Jennifer Weiner, discuss Transition, being your own best advocate, and important things to keep in mind as an adult with CHD .
Managing Your Care
Top 10 Things to Remember
This can be an especially trying time in the life of an adolescent with congenital heart disease, especially as they are undergoing the major transition of leaving the nest and going off to college, joining the workforce, or just moving far from home. This resource can serve as a guide to the key points to remember about taking care of their health, wherever they roam!
Guided Questions Tool - ACHD Edition
A list of questions for ACHD patients and families to ask their care team.
Guide to Your ACHD Care
This resource offers tips for maintaining care through adulthood and includes a summary chart of the ACC Guidelines to ACHD Care.
Parent Guide to Your Child's Future ACHD Care
This resource offers tips for helping your child maintain care into adulthood and includes a summary chart of the ACC Guidelines to ACHD Care.
Are you starting Adult Congenital Heart Disease (ACHD) care for the first time or moving away from your current center? Finding a new team and getting through your first visit with a new doctor can be challenging. This resource provides steps to consider as you begin choosing your new care team, prepare for your first appointment, and continue follow up care.
Understanding Health Insurance for College Students & New Grads
The current health insurance system in the U.S. can be a complicated system to navigate, so this guide is designed to help students understand staying on their parents plan, the Affordable Care Act, how to choose the right plan, and common insurance terms that every patient should understand.
Need a reminder to take your meds? Want to keep your medical records all in one place? There's an app for that! Check out this list of useful apps for managing the various aspects of your care.
A Patient Guide to Heart Surgery
A Website Presented by Cardiothoracic Surgeons Committed to Improving Patient Care
School & Work
Top Things to Know: College Students with Congenital Heart Disease
A congenital heart defect (CHD) is a lifelong condition. While a CHD is never “cured,” there are plenty of opportunities to thrive in college with the disease if you remain healthy and stay in medical care. Here aresome tips to help your move to college with a CHD.
20 Scholarships for Students with Health Conditions
This guide provides a look at some scholarships available for students with medical conditions, as well as advice on how to win them. While several cover other conditions some do pertain to those with CHD. *Please note, this resource is not maintained by CCHD, scholarship info is updated by a third party.
Family and Medical Leave Act (FMLA) Fact Sheet
As adults, we can't have our parents call us in sick to school when we have extended medical needs or family to take care of, but we may not be eligible for extended disability leave from work. The Family Medical Leave Act (FMLA) could be a good option for you, if you or your loved one need more than a couple days off of work to manage a medical issue. Below find details on what and who FMLA covers.
Family & Lifestyle
Teen Blog Topics
It is important that teenagers are involved with their self-care and learn to manage their own health. Topics in this blog series include: Medical I.D.'s, Going off to College, Preparing for Independence and an excellent Q&A.
Teen and Adult Patient Facebook Group
This closed Facebook group is a place for teens and adults with CHD to connect with others who face similar struggles and celebrate similar victories. This group is for teen and adult patients only.
Just a Thought
Sometimes it's most helpful to hear from those just like you. Just a Thought is a collection of quotes from teens on their experiences and "mental health struggles teens face in high school."
Toolkit: Managing Stress
This resource, developed by NHS University Hospitals Bristol, offers tips to manage the stress that can accompany chronic illness. With consent, the format has been modified.
Toolkit: Managing Anxiety
This resource, developed by NHS University Hospitals Bristol, offers tips to manage the anxiety that can accompany chronic illness. With consent, the format has been modified.
Toolkit: Managing Depression
This resource, developed by NHS University Hospitals Bristol, offers tips to manage the depression that can accompany chronic illness. With consent, the format has been modified.
Digging Deep created a game to help young adults (tweens and up) work through difficult feelings and find joy when it seems a little lost. A great resource in the uncertainty of the current pandemic and other difficult stages of life, like coping with illness. *Please note this is not intended for young children.
Conquering CHD Stories
Holden Joseph Flynn
It was at out 20 week ultrasound that we learned of Holden’s Congenital Heart Defect. We were naïve to parenthood and CHDs, but educated ourselves as much as we could to prepare for his arrival. Holden Joseph Flynn came out swinging on October 11, 2011, diagnosed with Unbalanced Complete Atrioventricular Canal, a complex single chamber...Full Story>